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A Traveler's Most Arduous Journey, to the Land of No Diagnosis

At the age of 37, I had never been ill. As far as I could remember, I had never even had the flu. Famous for my iron constitution and robust good health, I had been working for many years as a travel writer, happily trotting off to the South Pole, spending months in India without a moment's sickness and, when I was pregnant, making medical history by getting constipated in Bangladesh.

Then late last year I suddenly visited a place that was infinitely more foreign. It was the strange and frightening land of undiagnosable sickness and untreatable disease, a place where I was a new mother who became a child in need of her own mother. For 37 years I had barely given my body a thought; now it was about to betray me.

WE had spent the weekend with my parents in Bristol, my hometown in the south of England. It had been a pleasant, ordinary weekend. On Sunday afternoon Peter, the man with whom I live, and I enjoyed a leisurely five-mile walk, pushing our 18-month-old son, Wilf, in his baby jogger.

After Peter drove us the 125 miles home to London that evening, I shivered from a mild temperature and had a vaguely cotton-wool head. Flu, I thought -- then, so what? I had a book to review, so I could stay in bed the next day and read it while Wilf was cared for by the much-loved nanny we shared with a neighbor.

I stayed in bed, but the fever returned intermittently and was so debilitating that the book lay open at the same page for hours. Still, there was no real cause for concern.

Then Wednesday evening, my symptoms became acute. My lungs ached, I had abdominal cramps, and when my little boy tried to cuddle me, I cried out in pain. I wasn't afraid -- not yet, but I recognized that my illness had won, temporarily at least.

I rang my doctor in the morning from bed. She told me to come in when her office opened and that she would see me first as an emergency patient. I didn't feel like getting dressed, let alone going out, but I didn't have the will to argue.

My temperature was a lively 105. I vomited in the office. After examining my abdomen, my doctor asked me to wait in a side room. I now know that she telephoned the doctor on duty at the nearest hospital, saying she thought I was about to suffer liver failure and would be arriving as an emergency patient.

University College Hospital and its sister hospital, the Middlesex -- vast, Victorian edifices in the Bloomsbury and Fitzrovia districts of London -- are among the biggest teaching hospitals in Europe and recognized centers of excellence. While they have private wings, both hospitals are run by the National Health Service and, as such, serve the whole population.

I was admitted to the accident and emergency department at the University College Hospital, where the doctor in charge and a few of his juniors set off down the road to diagnosis. How optimistically naive. None of us dreamed that diagnosis was to become the grail. It never occurred to me -- not for one moment -- that there can be illnesses with no name, whose cause is unknown, whose course is obscure, whose cure would be at best problematic.

MY chest X-rays were clear, while an ultrasound revealed an inflamed and enlarged liver and adrenal glands. My temperature blazed on while I waited prostrate on a trolley in a narrow cubicle with ill-fitting curtains. I was put on a rehydrating drip.

Too ill to move, I thought about nothing except getting through the next minute, and then the one after that: it was as if all other areas of my consciousness had shut down.

The hours unraveled. Peter arrived. A fistfight broke out as a homeless, intoxicated diabetic in the next cubicle refused to be admitted. I began to cough. I was insatiably thirsty. The doctors were foxed. A blood test had revealed acute pathogenic activity -- that is, my body was fighting off something -- but no signpost to a diagnosis. I was admitted to a ward, and my eyes began to feel gritty.

Peter decided -- and it was a decision he stuck to throughout -- that while a hospital isn't a welcoming place for an 18-month-old, it would be better for Wilf to see me each day, as on some level this would reassure him that I had not disappeared forever. (The doctors had concluded early on that my illness was not communicable.)

For me, his visits were bittersweet. I longed to play our rough-and-tumble games, but could barely raise my head. I so desperately wanted to show Wilf that I was his cheery old mum, same as ever, but I could not perform this simple maternal task.

As I did not have a private room, Peter spent most of these visits restraining Wilf, who was drawn like a magnet to the medical paraphernalia surrounding the frailest woman on the ward. For the first time, I felt very afraid.

THE next morning, Day Two, a baffled consultant diagnosed nonspecific pneumonia (the kind that does not show up on an X-ray), prescribed antibiotics and consigned me to the care of a thoracic specialist at the Middlesex, where I was transferred by ambulance. My eyes were worse, but I was out of emergency and, more important, I had a label. The relief this afforded became clear only when Dr. Thorax looked at me, my X-rays and my medical records and declared that there was nothing wrong with my chest, that the antibiotics should be stopped and that I had hepatitis. There was no treatment for hepatitis, so we were to await the results of further blood tests.

Over the next two days, my thirst and eye problems became acute. I was downing liters of water to no avail, while my voice diminished to a croak. My red eyes stung almost unendurably, at least taking my mind off my stomach cramps.

What could be neither ignored nor denied was that nobody seemed to know what to do. The new blood tests revealed that although my liver was barely functioning, I did not have hepatitis. This was a heavy blow, as I was increasingly desperate to acquire a diagnosis, a label.

I was feeling too poorly to read, but my father brought in a radio and earphones. This radio became my only friend during the long, lonely nights when my febrile imagination was stalked by death and the ineffable, heart-crunching sorrow of a small, motherless boy.

Experts were called in from the further reaches of the hospital. A junior doctor from rheumatology performed a basic test on my eyes to determine how the lachrymal glands were doing. The results nearly had him leaning out of the cubicle, shouting, ''Hey everyone, come and see this!'' These glands, and their saliva-producing associates a few inches below, had stopped functioning.

The professor of rheumatology appeared, a wonderful old-school doctor in a white coat. (Some of the specialists I had seen looked like commodity traders.) The tear-and-saliva problem, he said, turned out to be a symptom of a variety of auto-immune diseases -- in which the body essentially attacks itself -- that come under the rheumatology umbrella. But blood tests for the most obvious auto-immune diseases (rheumatoid arthritis and lupus) were negative, and the professor said he didn't think I had any of these conditions, because the symptoms had come on too fast.

Nobody, it seems, wanted me. I looked enviously at other patients, all neatly categorized, all following a treatment plan. Getting well seemed a long way off: for the moment. I longed only to know what was wrong.

In their twice-daily rounds, doctors began posing increasingly bizarre questions as they trawled their memories to find a disease that might fit my case. ''Been in contact with deer?'' a gastroenterologist asked hopefully one morning. But I did not have Lyme disease. H.I.V. was ruled out since, according to hospital policy, I had been tested when I had my baby.

Medical students were drawn, mothlike, to my bed. I was having so much blood taken, I wondered if I shouldn't add anemia to my list of symptoms. I was given drops to replace my tears, and was obliged to use them every 10 minutes.

I was told off for drinking too much fluid: it was, the doctors and nurses said, thinning my blood. ''But I'm so thirsty all the time!'' I tried to tell them; no voice came out.

A sinister spray of fake saliva arrived from the pharmacy, and I came off the drip. The nurses began measuring my fluid intake, and I was required to collect my urine in flasks so that they could measure it, too. In the middle of the fourth night, a nurse told me crossly that drinking too much could cause a cerebral edema, a swelling of the brain.

My world had shrunk. Or rather, it had vaporized, and I had entered a hostile universe. Although I longed each day to see my Wilf, when he arrived I wanted him to leave this place and get back to the warm and furry world he knew, where everyone loved him and there was no sickness or death or queer-looking tubes that he wasn't allowed to pull. He had quickly grasped the fact that Mummy wasn't playing, and spent most of his visits racing through the ward, annoying the harassed nurses.

Meanwhile, life at home was lurching on without me as Peter struggled to cope with our child, the house, his job and hospital visits. My mother came to stay, and we relied heavily on our nanny, as I had an atavistic longing to see my mother holding a vigil at my bedside. I even wanted her to help me with the bath I struggled to take each day as part of my pitiful routine. It was a curious reversion to childhood.

In the end, Mum didn't really say or do much. She mostly sat, knitting, putting down her needles to hand me an occasional glass of rationed water. But it was enough.

I instructed Peter to fend off other visitors, but was impressed at how my closest friends ignored my wishes and came anyway. I liked that, imagining that I might have done the same had the roles been reversed. My old chum Phil brought an immense bunch of flowers. Nice thought, but it sent my desiccated throat into severe spasm.

By that stage I was no longer surprised at anything that happened; indeed, I waited with keen interest to see which bit of me might fall off next. In some far-off part of my mind, I was grappling with the concept that medical science was imperfect. Something was going on in my body that nobody understood, and perhaps never would. It was a deeply unsettling notion.

The nurses managed to arrest the spasm by getting something syrupy down my throat, and I turned again to Phil. But he was slumped in the visiting chair, frightened out of his mind and looking in need of medical attention himself.

FIVE days in the hospital, and my temperature had stopped spiking into the stratosphere. For the first time, the day's lengthening shadows did not bring that agonizing dread. My voice came back, and my cough subsided. I had had too violent a shock to indulge in optimism, however, and, anyway, my liver function was still very poor. I was wheeled off to distant hospital clinics to have various organs examined by specialists.

Some of these places were reached by underground tunnels, stygian affairs in the bowels of London, the dusty walls lined with Dickensian medical tomes about the curative properties of the leech.

There had been talk of sarcoidosis, a chronic systemic disorder that tends to afflict women in their 30's. This diagnosis was popular with the liver consultant, but Dr. Thorax, a distinguished physician, was unconvinced. His ruling? ''A particularly virulent virus, a hepatitis-type virus,'' he said. ''I think you're going to get better on your own.'' He hesitated. ''Let's hope it's that, anyway.''

And if it's not? ''It's something you'll have to the end of your days.''

Aweek after I had been admitted to the hospital, I was getting better; my doctors wanted to let me go home, but it was difficult to do that without a firm diagnosis. As a final, almost desperate measure, they ordered a liver biopsy.

I still do not know whether they were looking for something very nasty and they just didn't want to say; I wish they had. One of the depressing aspects of my mystery illness was the lack of a focus for my anxieties. If you find a lump, you know what you're worried about. My demon was nameless.

The next day a bit of my liver was snipped out under local anesthetic. The day after, Dr. Thorax was confident enough to send me home before the biopsy results came back, and I was dispatched with industrial quantities of eye drops, saliva, mouth ulcer cream and mouthwash tablets (these last two to combat problems resulting from lack of saliva).

It was a mixed blessing. Out of the hospital, without a supporting infrastructure, I realized how very ill I had been -- and still was. For the first two weeks home, alone for most of the day, I could barely get up. My eyes were so painful, I was unable to read. I thought I was never going to get better.

I was even annoyed to discover that despite two weeks of not eating and abundant sweating, I had lost only seven pounds. This seemed to me the most abject swindle, since surely one of the few fringe benefits of being ill was to be thin at last.

It was tough for Peter and Wilf. I used what little energy I had to maintain a functional living environment for us (just), and I had help from friends and relatives. Now that my condition was no longer worthy of hospitalization, I elicited less sympathy. It wasn't quite a question of walking faster, but almost.

The elegant 19th-century English essayist Charles Lamb spotted this when he wrote: ''How convalescence shrinks a man back to his pristine stature! Where is now the space, which he occupied so lately, in his own, in the family's eye?''

I had serious problems maintaining my morale, and was obliged to acknowledge that my emotional stamina was not what it had been -- or what I had thought it was. I realized how desperately, in sickness, we need to be labeled and categorized. I longed to be told that I had pneumonia or hepatitis or any damned thing, rather than inhabiting this terrible no-man's, no-diagnosis land.

Ifell mysteriously ill very quickly, and I recovered in the same fashion. Suddenly I was no longer using eye drops every 10 minutes. My lachrymal and salivary glands started working, quickly reaching 90 percent production. The biopsy results revealed nothing more than inflammation. A month after I was discharged from the hospital, tests revealed a perfectly functional liver. I began to think about work.

Did I learn anything? I'm not sure. I have developed a Proustian obsession with health. (''To kindness and knowledge,'' Proust wrote, ''we only make promises, but pain we obey.'') I have lost confidence in my body; I cannot dismiss even the simplest ache or pain, as I once did. I am acutely aware of my own mortality -- and of everyone else's. I do not find this a particularly helpful or healthy state.

I scan the death notices in the newspapers, not looking at the names but trying to find tragic cases of mothers leaving small children behind in a lonely world. I think almost daily about trying to have another child, quickly, in case I die, so that my Wilf will have siblings to comfort him in his grief.

Crazy? Perhaps. But serious illness changes the way you look at the world. I am more aware, too, of how sweet life can be, and this is a gift. I find it easier to spend less time at my desk and more on the park swings with my son. I perceive the medical profession with more sympathy: its members are not oracles. They are struggling to make judgments based on imperfect knowledge, like the rest of us. What they do not know is far greater than what they know.

The liver tests, by the way, were not the end. Two months after that, most of my hair fell out. The result of catastrophic illness, the experts said. But that was the beginning of the end. At least, I hope it was.